Abstract [en]

Background The publicly financed health service in Sweden has come under increasing pressure, forcing policy makers to consider restrictions. Objective To describe different perceptions of rationing, in particular, what citizens themselves believe influences their acceptance of having to stand aside for others in a public health service. Design Qualitative interviews, analysed by phenomenography, describing perceptions by different categories. Setting and participants Purposeful sample of 14 Swedish citizens, based on demographic criteria and attitudes towards allocation in health care. Results Participants expressed high awareness of limitations in public resources and the necessity of rationing. Acceptance of rationing could increase or decrease, depending on one's (i) awareness that healthcare resources are limited, (ii) endorsement of universal health care, (iii) knowledge and acceptance of the principles guiding rationing and (iv) knowledge about alternatives to public health services. Conclusions This study suggests that decision makers should be more explicit in describing the dilemma of resource limitations in a publicly funded healthcare system. Openness enables citizens to gain the insight to make informed decisions, i.e. to use public services or to 'opt out' of the public sector solution if they consider rationing decisions unacceptable.

Abstract [en]

Resource allocation in publicly funded healthcare systems is inevitably linked with priority setting between different patient groups and between different service areas, so-called meso level priorities. Behind every priority-setting decision (investments, reallocating or rationing), are values affecting both the content of the decisions and how the decisions are made. The importance for priority-setting to reflect social values, has been emphasised for the legitimacy of the healthcare systems and the decision makers. Also important, if supposed to provide enough guidance in practice, is that content values, expressed in ethical principles and criteria, are further operationalised. Few studies exist where Swedish citizens have been asked about priority setting and rationing at meso level, and findings from other countries cannot automatically be transferred to the Swedish context.

The overall aim of this thesis is to extend and deepen the knowledge of the Swedish citizens´ views on acceptance of rationing in healthcare, on appropriate decision makers for rationing, and on the severity criterion for priority setting. Two qualitative and one mixmethod study were conducted, where citizens were interviewed. Citizens´ views on severity were also compared, both with a Severity Framework, derived from parliamentary-decided ethical principles and used for resource allocation, and with health professionals´ and politicians´ ranking of different aspects of severity in a quantitative, survey study.

Study I shows that citizen participants perceived that acceptance of rationing at meso level is built on the awareness of priority-setting dilemmas between patient groups. No such spontaneous awareness was found. Depending on reactions of self-interest or solidarity, acceptance was also perceived to be built on acceptable principles for rationing and/or access to alternatives to public care. Study II shows that awareness of the meso level forms the basis for awareness of different risks of unfairness, linked with potential decision makers (even health professionals). Collaborative arrangements were promoted in order to control for such risks, especially the risk of self-interest. Politicians, in contrast to previous studies, were favoured as final decision makers for rationing healthcare. In study III, citizen participants identified the same severity aspects as health professionals and experts had done in the Severity Framework. They contributed with some possible refinements, but also promoted aspects not in line with established ethical criteria for priority setting in Sweden. Study IV shows that citizen respondents differ to a larger proportion compared to politicians´ ranking of severity aspects, than with that of health professionals´. The greatest number of significant differences was found between politicians and health professionals.

This thesis has several implications. Politicians ought to strive for greater public awareness of the priority-setting dilemma at the meso level in healthcare, both according to the process and the content values behind the decisions. Social values not in accordance to the parliamentary decision indicate a need to facilitate an ongoing dialogue, reason-giving activities and promotion of content values of solidarity. To capture social values on priority setting and rationing, ambitious public deliberation is not the only way. Methodologically stringent research, with a variety of study designs, could contribute in many important ways.

Place, publisher, year, edition, pages

Linköping: Linköping University Electronic Press, 2018. p. 138

Series

Linköping University Medical Dissertations, ISSN 0345-0082 ; 1587

National Category

Health Care Service and Management, Health Policy and Services and Health Economy Medical Ethics Public Administration Studies Social Sciences Interdisciplinary